A group of families using our wonderful homeschooling program that makes it possible for this chronically ill mom to still bless my children with a quality, Biblically-grounded education even when we are "bed-schooling" many days.

Wednesday, December 30, 2009

(In)Courage is asking, "What are your God-sized dreams for 2010?" I've had so many God-sized answers over the years - a loving husband, three living miracle babies, dear friendships, a beautiful home, a minivan in our driveway, and now a new laptop in my hands. I feel so blessed. It feels sort of "greedy" to ask for more, and yet, God delights in giving good gifts to His children, so I am invited to ask.

But what would God have me ask? These things (beyond the blessings or family and investing in relationships) are so external. Yes, they matter to me and because they matter to me, they matter to God. But with a God-sized answer at stake, shouldn't I be asking God sized questions? Lord, what would YOU have me dream for this new year?

"Delight yourself in the LORD and he will give you the desires of your heart." Psalm 37:4 (NIV)

This past year God taught me about joy and I look forward to continuing this learning adventure in 2010! Some of my heart's desires for 2010, ones that feel quite God-sized from where I sit, include ongoing progress toward prevention of, treatment for, and (dare I hope?) even a cure for XMRV / Chronic Fatigue Syndrome, an illness that has imprinted itself over my entire adult life. I would also love to see God's continued unfolding of what He would have me learn about the life of Paul and his "thorn in the flesh" as He prepares my heart to write a book on living with chronic pain and illness.

I love to see my children thrive in their homeschooling and pray that I can be "fully there" in the teaching/learning process with them this year. I pray to be a blessing to husband, a "helper suitable" as God has given my the great joy of serving by his side. But most of all, my God sized dream is...

...Something I will be making a matter of prayer these next couple of days. I honestly don't know what God would have me seek and dream for the year ahead. It's a thrilling prospect, a horizon of hope, a fresh start, a new beginning. Lord, please help me to gracefully and willingly let go of the "fluff," the things that get in my way of seeking hard after You, the things that so easily entangle me. Instead, please replace all that stands in Your way of blessing me with the prefect gifts You long to shower upon me. Please fill my heart with Your dreams for me and allow me to delight in You as You fulfill them!

"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." James 1:17 (NIV)

Saturday, December 26, 2009

17 years ago last month, my husband and I, just three months into a new marriage, set out on the intentional path of striving to expand our family. Our oldest living son turned ten this week, so obviously that dream was slow to be realized!

Through those first seven years we had just two positive pregnancy tests. One resulted in our oldest's birth. The other led to the miscarriage of our sweet Noel Alexis. It was 15 years ago tomorrow morning that the bleeding and pain began. Tears for a few hours, followed by five months of numbness.

In hindsight I now see that my total lack of ability to process any form of emotion after Noel's death was more than just "denial" or "normal grief," but rather grief compounded by post-partum depression. (A journey I would again face on a much grander scale after the birth of our second living child, our daughter who will be seven next month.) It took me nearly half a year to allow myself to say the words, "I was pregnant," or "I had a miscarriage."

When I finally did choke the words out, the flood of sobbing, body-wracking tears last for hours! The emotions that had been pent up for months, not allowing a smile, a laugh, a tear, stayed close to the surface for the next few years, never giving me a moment's notice of when they might spring forth. I had irriational thoughts, like wanting to walk up to total strangers and simply announce, "My baby died." Infertiltiy is brutal. Miscarriage is torture. To miscarry our only known child in the midst of a many-year battle through infertility threatened to drive me to insanity with the intensity of my grief.

While on the one hand Noel's death intensified the infertility experience to a more painful level than I could ever have imagined, on the other hand she brought a strange measure of healing as well. I found joy in knowing that after more than two years striving for motherhood, that I was now, and forever more would be, somebody's Mom! Once I could admit to myself that Noel's brief life had not been a dream, simply a "late period" as I tried desperately to convice myself, I found some measure of hope and comfort in the fact that she had actually touched my womb, even if all-too-briefly.

Naming Noel was a very helpful step for me. Rick and I, not knowing if I had carried our son or daughter, but both "feeling" she was a girl, prayed long and hard over the right choice of a name. We chose "unisex" manes with meanings that touched our hearts, spelling Noel with the male spelling but pronouncing it with the femine pronouncation. We figured if "she" actually was a son, then he would forgive us in Heaven, but giving "her" an identity that I could relate to was so very important to me. Her name means "Christmas Minister of Needs" for she came and went over the Christmas season and ministered deeply to the hearting heart of this infertile want-to-be mother. I read of how "Mary treasured all these things in her heart" and my heart treasured the knowledge of the daughter I would some day see face to face in Heaven.

I hated when well-intended friends would try to comfort me with, "Well, at least now you know you can get pregnant." From anyone else, those words seemed to invalidate my child's precious, unique life and the profound loss to have her missing from ours. But when not minimized by other's "at least" statements, to be honest with myself it also was a relief to realize that we were truly "only infertile" and not utterly sterile, that there was hope of future conception.

But it also terrified me that if it had taken two years to conceive in the first place, even with medical aid, that it might be a very long road to a second child. And now that I had a "history of miscarriage" my innocence was shattered. Getting pregnant was just the first step, but the expectation of a living, bring-home-baby at the end could no longer be taken for granted in my heart and mind.

If you have stuck with me through all this rambling, you are probably wondering what does any of this have to do with "choosing joy"? With the dawn of 2009 God impressed upon my heart that my "theme word" for this year was to be Joy. He's confirmed it over and over, and while my husband may wonder where that joy has been (because he's seen me in some pretty black places with my health this year - 10 weeks in a foot cast, followed almost immediately by 5 months of IVs - physically exhaused, grumpy and especially wrestling to process all the emotional anguish of news about this retrovirus), I have to say that God's joy has been more tangilbe to me this year than in any I can remember since we started the infertility journey 17 years ago. I may not always be "happy" but God's joy, bouied by hope, and sustained by peace that passes understanding, has been tangible in ways I cannot put into words.

Here, in this week where we mark the birth of Christ, the death of our first daughter, the birth of our first living son and the due date of the child who would have been turning 8 but is also awaiting us in Heaven with two siblings, God gave me a beautiful reminder of all He has taught me this year:The Christmas stocking I've had since childhood had too many holes for my husband to use to put some goodies in on Christmas Eve. So we pulled out a couple of "extra" stockings we had picked up one year when we were out of town for Christmas and had forgotten our regular stockings at home. One bears the script "Noel" while the other says "Joy." In past years, without hesitation, I would have instantly grabbed "Noel," thinking much more of the daughter who was not there to share in our celebration than of the Christ-child who's birth I should have been focusing on. This year, with only the slightest moment's indecision, I eagerly reached for "Joy" instead.

Monday, December 21, 2009

Dec. 21 already. Amazing! I'm reflecting on "birth" right now - the birth of the Son of God (that came at the cost of a Father's greatest grief), the birth of our first living miracle (10 years ago this morning I was just starting labor), and the births we never got to enjoy, our little ones awaiting us in Heaven.

Joel Samuel, who shared a due date (2 years later) with his big brother and would now be turning 8, has been especially on my heart these past couple of days. His name means "The Lord will repay the years the locusts have eaten," and we named our son in faith that after so much heartache (deep financial struggles, multiple failed adoptions, miscarriages...) God surely had something more in store for us than years of tears and loss that had marked our first decade of marriage.

We had no idea what form that "something more" would be, perhaps emotional, spiritual or even physical tangible blessings, but we clung to the hope that His "more" would be perfect in His right timing and that He would not leave us adrift in the despairing grief that threatened to sink us. My heart is full with all I want to write on the kindness and grace God has washed over us in the eight years since Joel left my womb for Heaven, including two more living miracle babies! Yes, there have been hard times too, like my recent diagnosis of a retrovius (XMRV is one of only 3 known human retroviruses, the most well-known being HIV), but God has been so gracious through it all.

It seemed for so long we were the ones grieving, in need of tangible financial or other help. This Christmas, when so many are struggling, we live in a warm home with bountiful food, God's blessings overflowing. My eyes tear as we hand warms socks and an energy bar to the man with the cardboard sign on the corner, as my husband quietly walks forward to pay for lunch for the man who digs through his pocket and turns to walk out of the fast food joint because he doesn't have the change to cover a value meal, as we place a few small gifts of love in a friend's arms to put under the empty tree in her tiny apartment. We do it for Jesus. We do it for Joel.

[Edited Dec. 26 to say, after dedicating this entire post to Joel, I realized belatedly that it was actually Hannah Rose who shared a due date with our oldest J. She is the one that would have been turning 8. Joel would have been due in September, as we had two back-to-back miscarriages. There, Mommy-guilt for having mistaken dates surrounding the lives and deaths of my children, now somewhat relieved by this admission. As this is a mistake I still can't believe I would ever make "in my right mind," and especially one I'm still shocked that it took me nearly a week to even realize I had made, I'm chalking this one up to CFS/XMRV "brain fog". :( ]

Yesterday we enjoyed the blessing of a long, leasurly lunch with Rick's parents to celebrate Big. J's addition to our family 10 years ago - such a wonderful change of pace after 19 weeks of spending my Sunday afternoons hooked up to IVs! (On top of that, my hives are even starting to clear up. What a blessing!) We'll celebrate him again tomorrow (his actual birthday) with my side of the family.

My brother, sister(in-law) and nephews got in from Washington yesterday evening and spent the night with my parents. We will be seeing them in a couple of hours and spending the next 10 days together, so you might not hear from me much until the end of the year. As a "Christmas gift" I wanted to point you to a current blog give-away for Joy Dekok's wonderful book, Rain Dance. It takes on some heavy topics (infertility, post-abortion syndrome, grief - topics that scared me away from the book for far too long) but is an amazing read and will touch your heart. Enter to win your own copy at http://www.crazy-for-books.com/2009/12/blog-tour-review-giveaway-rain-dance-by.html

Thursday, December 17, 2009

I was so low when I posted yesterday. Thank you for bearing with my burdened heart. Tonight, I still ache and pray for those who have loved and lost, but my spirits have been lightened by the helping hands of a sweet friend who left her family for six hours to come and bless me today.

My bathrooms SPARKLE tonight (no small feet considering there have been 10 straight days of a tummy flu going through the family - EEEWWWWWWW). And I can walk across my kitchen floor without sticking to it - It has probably been four months since I've physically had the energy to mop (again, EWWW!) so this really is a HUGE blessing. I am overwhelmingly thankful for Becky's sweet servant's heart.

Wednesday, December 16, 2009

I hope this post isn't too much of a downer. I have a heavy heart tonight and just need to type it out somewhere. Since it doesn't seem like many people actually read this blog anyway, seems like a good place to work out my thoughts without casting gloom over too many.

This year I've had two author friends who had brothers-in-laws hit by drunk drivers. One was killed, the other is recovering surprisingly well. But both accidents were sobering reminders that life can change in the blink of an eye.

Last month a friend from Jr. High, whom I had only recently reconnected with via facebook, posted that her mom had died. It was sad to read as I remember her mother fondly and it was a bit shocking to think of someone as young as my own mom dying. But I hadn't seen the woman in more than 20 years and while I hurt for my friend in her loss, it seemed rather far removed from my own reality.

Shortly thereafter there was a terrible car accident in the dark of night at the intersection closest to our home. Three teenagers were life-flighted to the hospital while the mother of one lost her life that night. There was no alcohol involved just excessive speed and reckless driving. I knew no one involved in the accident, but heard the sirens that night and the roadside cross, about half a mile from the marker of a teen who was killed on the same road 2 years ago, is a sobering sight.

Then the weekend after Thanksgiving my parents learned that the son of a close friend was killed when he fell asleep at the wheel, driving back to college from Thanksgiving. I didn't even know the man, but because it hit my parents so hard, death seemed a step closer then.

And now, in the last 2 days, I have learned of three more deaths; the 2-year-old son of an online acquaintance who fell in the family pool, a doctor who had helped unravel some of my medical puzzle and treated me on several occassions, and now the mom of a very dear friend. I hardly know the child's mother at all, just ache for her heartache as she faces gifts that will never be unwrapped under her tree. But I had talked with my friend's mom, both face-to-face and over the phone, several times in the last couple of months, and suddenly she is gone. My heart is absolutely broken for my friend and there's this lump in the pit of my stomache that I can't shake away. But my doctor's loss hits me perhaps hardest of all, for not only was I a patient OF his for quite some time, but I was also a fellow patient WITH him, just three weeks ago giving up my bed in the infusion room so that he could use it for what would end up being one of his final cancer treatments...

I know I am exhausted and sleep deprived after a week and a half of caring for family members with the flu, and that's definately impacting my emotional state at the moment. Physically I'm also struggling thanks to these relentless hives that have me more on edge than normal as well. I'm not even sure what I'm trying to accomplish with this post other than to say that my heart aches for all the pain so many are facing, and yet I am overwhelmed with the blessings of simply drawing my next breath and putting my arms around my loved ones. So if nothing else productive comes from this post, other than the easing of my own heartache by the therapy of writing, I beg of you to celebrate this moment and take time for those you love, because life is so very fragile and fleeting!

Tuesday, December 15, 2009

I have to say that the IVIG is providing some obvious benefit because my entire family has had a nasty tummy bug and I've been the primary care-giver for 4 vomitting loved-ones for the past 9 solid days without getting very sick myself! This is the sickest I've seen my husband in probably 15 years and is one miserable bug. That I've managed to all but completely avoid it is unheard of. I've been nausiated, achy, lack of appitite and running a fever around 100 (none of these things are really out of the ordinary for me), but I'm still on my feet and I haven't thrown up once, even though I've only had 3 solid nights of sleep in the entire span of family illness.

So I made it through 19 infusions before my body would have no more. I spent last Sunday in severe pain, feeling as though my arm was being held relentlessly against a hot stove. Thanks to 3 doses of benadryl (the second two via IV) I did not have breathing issues until the very end of my infusion, but the hives were out of control. It seems I'm now allergic to tegaderm (the clear bandaging that is used over PICC lines and IV lines) and we had to switch over to a secondary IV line mid-transfusion, remove the dressing on the IV, and then even in drug-induced sleep I was jerking awake violently, trying to get my arm away from the searing pain. I have open hives on my chest and they continue recurring on my arms, neck, face, and now on my feet as well. Under the bandaging where I've had my PICC for the past 4 months, my arms is just one raw, oozing mess.

Today we pulled the PICC line. My doctor is giving me a full month off from IVs, then we will try again mid-January and space them 2 weeks apart for each of the remaining 5, with hopes that my hystimine levels will settle down enough between now and then to be able to sucessfully complete the treatment. While I hate to stop them when it seems they were finally making a difference, I can't help to be incredibly relieved to have the PICC out and a break from the Sunday treatments. In just the 7 hours since the line was pulled and all dressing removed, my arm looks (and feels!) amazingly improved over even this morning (though it still makes my family gag to see it even in this speedily recovering state).

So at the moment, I don't have any other medical appointments or treatment scheduled until Jan. 17 when we resume infusions on a bi-weekly basis. What a wonderful Christmas blessing! Now if I can get my skin feeling better and keep from getting sick without the infusions, that will be fantastic.

Thursday, December 10, 2009

Today I mentioned something about Los Angeles to our 6-year-old, Miss R. She informed me, "Speaking of Los Angeles, we haven't seen Jacqueline's family in a while and we really need to get together with them soon!" I agreed that yes, we did need to get together, but wanted to know what that had to do with LA. She replied, "You know, Jacqueline's mommy, Miss Angela, like Los Angeles!"

Is there a little girl in your life (niece, friend's daughter, student) who loves American Girl size (18 inch) dolls and you want to make really happy? This is an adorable and very inexpensive idea that is sure to delight!

Wednesday, December 9, 2009

We have always been quite upfront with our kids, trying to tell them the truth in all areas and honestly answer any questions they have as clearly as we can, on topics ranging from sex to Santa Clause and everything in between. But this year Little J, at not quite 4, is blurring the lines between fiction and reality. While he will tell you that Jesus is real and Santa is just pretend, he doesn't fully "get it" yet.

Add to that a 6-year-old sister's passionate efforts to evangalize him by force (we keep explaining to her that we can't make him trust Jesus and that if God is calling his heart, he will respond in his own right timing, but she is desperate to see him make this choice), and here's the prayer we heard from him this week. "Dear Jesus. Please take me off the naughty list..."

It was a precious moment, but I had to bite my lip to keep from laughing out loud!

I just discovered The Great Kindle Giveaway and am excited for a chance to win one of these great tools. He's giving away up to 15 free Kindles (the more business he earns through his free promotion, but more Kindles he'll end up giving away) and I would love it if I won one of them and so did you! To enter, just sign up for his email list (that's easy!) and if you want more entries, he gives you several more ways to earn them (posting a quick blog entry like this one for example). Won't you join me in giving it a try?

IVIG #18 started off a little rough, but about 4 hours in I took an amazing turn and actually felt pretty decent for the end of the infusion and ever since! I am still incredibly tired, but I did not come home and crash and actually functioned reasonably well all day yesterday even after getting up with a sick child in the night and doing lots of extra loads of laundry thanks to her tummy bug. I still don't feel "good" but surprisingly "better" than my normal post-infusion days. Six more weeks to go.

I convinced the nurse to leave off the PICC line security tape "butterfly" this week. I'm at pretty high risk for loosing my PICC line without it, BUT I have very few new hives from this last dressing change and the old hives are starting to heal dramatically! I did try a vitamin supplement again last night (that I had started shortly before the hives first began, but stopped about a week ago in case there was any connection) and the existing hives did flair up noticably within half an hour of taking those, so I think I will continue avoiding them until we are fully finished with the IG. But the biggest culprit really does seem to be that PICC line butterfly and both the immediate and ongoing improvement in my pain and frantic itching levels without using it at the last banddage change is DRAMATIC improvement!

Sunday, December 6, 2009

I've been doing better, overall, with sleep lately. But tonight I woke up a little after 2, hives got stirred up again (been battling deep, raw, oozy, nasty ones for about 3 weeks, initially triggered by my PICC line dressing), took more Benadryl. Here I am, more than an hour later, desperately wanting to be back to sleep, but finally giving up and climbing out of bed for a few minutes to see if staring at a computer screen might induce the sleep-bringing numbing of my mind. My legs are alternatively numb and prickling with pain.

Today's infusion day again. They are pretty much blurring together now, but I think I have just six left now, either including today or at least after today. Not going to bother checking the calendar at the moment. We seem to have a pretty good system going - pretreat with Benadryl 50, half a bag of normal saline to make sure I'm well hydrated, the one actual bed in the infusion center so I don't fatigue myself from the effort of having to stay semi-upright in a recliner, turn on the oxygen tank, start the IVIG at an agonizingly slow rate of 5, then monitor for the next 4-6 hours to see how I do. When my chest starts getting tight or my throat starts to burn, the second dose of Benadryl is called for and the oxygen gets turned up a bit higher.

We coax the IG drip up 2-3 points at a time, hoping to get to an infusion rate of somewhere between 12-18 before the day is over. The higher we can go, the sooner I can go home - but it's a delicate ballance, because if we go to fast, I face harder reactions as the benadryl wears off, like the day we nearly called 911 when I got home and couldn't breath. Somewhere along the line, we change my dressing and pray that the domino effect of fresh hive break outs won't drive me too far over the edge. Once the beeper tells us that I'm finished for another week, the second half of my saline bag pumps on, bringing refreshment and the ability to walk out of the infusion room on my own power. (OK, let's be honest here and admit I can never do anything on my "own power," only through God's life-breathing strength, but I think you get the point - I'm thankful to be able to make it to the elevator without a wheelchair by this point.) I come home tired and clawing at my PICC line hives (and other random outbreaks), glug more benadryl, attempt some semblance of dinner with my family, then crawl in bed for the night.

I'm thankful that before all this awaits me for yet another day, that first I will be able to sit at Jesus' feet this morning, be refreshed and challenged by the insights into His Word shared by our pastor, and lay all the burden down through praise and worship. I'm not doing such a great job at daily digging into my Bible on my own through this season, so I'm utterly hungry for "spoon-feeding" from others while I'm too overwhlemed to do much "meat cutting" on my own. Thank you, Lord, for my family including an amazing husbnad, kids, parents and extended family, a lovingly supportive church, and especially for Your Spirit to walk with me each step, through places and experiences I otherwise would go alone.

Friday, December 4, 2009

I love the loving hearts of my miracle kids. They have been saving all year in great anticipation of the gift-giving catalogs coming in the mail at year's end. They just purchased a hive of bees, a dozzen chicks, and a "Jesus Loves Me" lamb for needy kids/families overseas. (Mom did a little gift-matching to get them all the way there, but they hit the goals almost totally on their own!)

Editing to add another story with a lump in my throat! Oldest son (not quite 10) just handed me $100 of his own money saved up over the past couple of years and asked me to write a check on his behalf for Bible translation for those who do not have Scriptures in their own language. I would like to invite you to visit God's Word for the Nations to see what's inspiring our sweet boy!

Want to join in the blessing? Here's where giving may "pay off" for you! Visit Samaritan's Purse (the Christmas Shoebox people) and shop/donate from your computer - couldn't be easier! And after you have opened your purse a bit, head on over to Sarah Mae's Like A Warm Cup of Coffee blog and enter to win a Sondra Roberts purse valued at over $100!

Thursday, December 3, 2009

* More people in developing countries die of a water related disease than of malaria and HIV/AIDS combined.

It is easy to feel helpless, half a world removed from such suffering, but as shared in my Thanksgiving post at Hope Harvesters™, there are some simple, everyday things we can do that are easy for us, yet life-saving for others. Consider your Christmas tree purchase for example.

Due to allergies our Christmas tree is the boxed kind, but if you plan to bring the smell of fresh pine into your home this month, did you know you could help bring fresh water to Africa at the same time? Please visit The TreeWell Project at http://lifechurchreno.com/treewell

Several of our friends attend the church sponsoring this great project and I can assure you there are great people with hearts to serve hurting people - your money will be used well! (If you don't live near Reno, NV but like this idea, think about contacting the director of this project to help plan something like this from your own town for next year.)

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